Long Covid in the media and social media 2023

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Warning - this is upsetting and emotional reading about NHS/doctor/paediatrician treatment of a young girl who caught Covid in early 2020 :

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https://twitter.com/1goodtern/status/1631013894197071877

 
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Arnie Pye said:
Moved post

Warning - this is upsetting and emotional reading about NHS/doctor/paediatrician treatment of a young girl who caught Covid in early 2020 :

Code: 
https://twitter.com/1goodtern/status/1631013894197071877

Click to expand...


I grieve for this poor child, and the inhumane, ghoulish behavior inflicted upon her. This is a snapshot of medicine, of the system that allows figures we know well to thrive. Gaffney, Wessely, Carson, etc are a symptom, rather than a cause, of such a contemptuous business.
 
It's hard to put into perspective just how morally and intellectually bankrupt the BPS model is, how disastrous the decades of coercive implementation have been.

In threads like this, What are your most serious symptoms?, universally what you find is that none of the BPS stuff is ever mentioned, while everything they refuse to acknowledge is all that is ever mentioned. They are literally and as completely wrong and useless as can possibly be. Their list of priorities, and our list of priorities, have no overlap whatsoever. This is actually hard to achieve randomly. It's failure by design.

There is nothing comparable to this anywhere else. It's like a restaurant that doesn't even think food is relevant to their business. It's genuinely hard to find analogies that aren't too absurd to compare to.

Literally zero overlap. Of course they're failing us. No one can succeed at anything by rejecting reality and substituting it with useless fairy tales. This approach has never worked once.

Apparently there is a Guardian article today that is basically a "woe is me" from doctors saying they're struggling to help with Long Covid. They freaking chose all of this. We told them the whole time and it's well-documented. They did it again. The exact same way, for the exact same reasons, with the exact circular reasoning and logical fallacies. And they are surprised that it's not working out? But somehow it's none of their fault?! What is this absurd dystopian nonsense?
 
The CDC has acknowledged that COVID infections cause long-term health issues in all bodily systems. Buried in a brief about how to code deaths. Not much public awareness of this, the hopium must flow.

The starting position regarding this was that this would never happen, because "viruses don't do this". Loud, and accurate, warnings and research proposals were poo-pooed away as fearmongering, or whatever. All of it, hence the refusal to consider researching it at all.

Emerging evidence suggests that severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the virus that causes COVID-19, can have lasting effects on nearly every organ and organ system of the body weeks, months, and potentially years after infection (11,12). Documented serious post-COVID-19 conditions include cardiovascular, pulmonary, neurological, renal, endocrine, hematological, and gastrointestinal complications (8), as well as death (13).​

https://www.cdc.gov/nchs/data/nvss/vsrg/vsrg03-508.pdf
 
‘We are struggling’: doctors faced with vacuum of information on long Covid (Guardian)

“We don’t quite have our finger on the pulse of what’s wrong, what biologically is causing it, and that’s a big problem,” said Dr Marc Sala, co-director of the Northwestern Medicine Comprehensive Covid-19 Center. “It’s hard to direct drugs or treatments without having the biological underpinnings for why someone is feeling so fatigued with exercise.”
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The medical field also does not have a clear understanding of long Covid in part because the National Institutes of Health (NIH) initially focused on its symptoms rather than the addressing the underlying problem, said Dr Ezekiel Emanuel, a bioethicist at the University of Pennsylvania.

That “was exactly the wrong approach”, Emanuel said. “This is a major, major problem, and what we were initially going to try is Band-Aids.”
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I have a problem with this bit —

In Sala’s city, Chicago, Jonathan Toews, the star and captain of the Blackhawks, recently announced that he was stepping back from the NHL team because he continues to suffer from long Covid and chronic immune response syndrome.

“This is the kind of person who I think it surprises people most,” Sala said. “Someone who was athletic, ran marathons, and then suddenly cannot get back on their feet or do what they wanted to, athletically, before. That’s the individual who really has that stigma associated with it.”
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Nope — that's just the person that sounds like a financially / socially privileged, previously healthy, white male. I think you might be ignoring the stigma for the other demographics because it's so established it's not even considered a stigma, just normalised societal thinking.
 
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rvallee said:
This is actually hard to achieve randomly. It's failure by design.
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Leaving aside whatever the initial intentions of this approach were, it is clear that it has now degenerated into arse covering by any means.
rvallee said:
It's like a restaurant that doesn't even think food is relevant to their business. It's genuinely hard to find analogies that aren't too absurd to compare to.
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Indeed. Though that is a good one.

It is one of the main problems we face. Most people with no knowledge of what has happened really do struggle to both understand the situation, and deal with how confronting it is. The reaction by most is to just walk away from it, even if they are sympathetic to patients' dilemma.

I get it, and am not angry at them for that choice. Might as well be asking them to solve world hunger. But it doesn't help fix the problem in any way either.
 
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SNT Gatchaman said:
‘We are struggling’: doctors faced with vacuum of information on long Covid (Guardian)





I have a problem with this bit —



Nope — that's just the person that sounds like a financially / socially privileged, previously healthy, white male. I think you might be ignoring the stigma for the other demographics because it's so established it's not even considered a stigma, just normal societal thinking.
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They are acknowledging some mistakes they made. They were told all about those mistakes from day 1. And pretty much constantly the whole time. Very precise and accurate warnings. They're the same mistakes that failed us for decades. Repeated again for the same reasons.

Many LC advocates pointed those out, how they were ignored, talked over, etc. They raised those concerns, made the people in charge aware. We aren't invisible, we are deliberately ignored as if we don't exist. Even when we tell them things they later admit. The same mistakes that failed us for decades. They still don't change anything in how they work, still can't even look at us.

Same with athletes and very fit people. It was beyond obvious within weeks, patients reported it all the damn time. It invalidated all the nonsense about deconditioning, so it was ignored to the point of being suppressed.

They were told about all the mistakes they were about to make, then made them anyway, and now they're saying "we made mistakes", while pretending they couldn't have known any better. And it seems they wasted most of that $1.15B on those mistakes and there isn't any more coming.

This is why they fail us. No accountability. No recognition that there are people who actually know what they are doing here, have drawn a roadmap, the very same roadmap some now admit should have been taken, told them about all the mistakes they were about to make.

So are they going to change? Anything at all? Work differently? Doesn't seem so. No indication of that anywhere.
 
SNT Gatchaman said:
I have a problem with this bit —
Click to expand...
In Sala’s city, Chicago, Jonathan Toews, the star and captain of the Blackhawks, recently announced that he was stepping back from the NHL team because he continues to suffer from long Covid and chronic immune response syndrome.

“This is the kind of person who I think it surprises people most,” Sala said. “Someone who was athletic, ran marathons, and then suddenly cannot get back on their feet or do what they wanted to, athletically, before. That’s the individual who really has that stigma associated with it.”
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It's not entirely unreasonable to be surprised that LC causes such a high rate of complications in young, previously healthy people. I was shocked when I learned in spring 2020 that Covid was leaving people in their 20s and 30s disabled. (I didn't know I had ME back then.) And it's good to acknowledge the stigma of being "too young" to be sick. What matters is updating your assumptions when proven wrong.
 
‘Starting point’ for long COVID management should be treating symptoms, empathy
SCOTTSDALE, Ariz. — In the absence of approved long COVID therapies, rheumatologists are encouraged to treat the symptoms and “listen empathically,” noted a presenter at the Basic and Clinical Immunology for the Busy Clinician symposium.

“This is an incredibly complex, controversial, evolving part of the pandemic,” Leonard Calabrese, DO, RJ Fasenmyer Chair of Clinical Immunology at the Cleveland Clinic, and chief medical editor of Healio Rheumatology, told attendees at the hybrid meeting. “The next phase of the pandemic will be about long COVID.”

[...]

However, some signals have begun to emerge.

Women are reporting long COVID at twice the rate of men. Individuals older than 40 years, those with poor health prior to infection, and those with severe disease vs. mild disease have also reported higher rates of long COVID. Meanwhile, lower socioeconomic status has additionally been associated with long COVID.

“Social determinants of health need to be further analyzed,” Calabrese said.

Researchers are currently exploring the potential mechanisms of long COVID. These include inflammation, persistent COVID-19 virus, reactivation of other viruses, changes in microbiome, clotting issues and immune responses and autoimmunity, among others. Although so-called “micro-clots” are a cutting-edge theory, Calabrese stated this hypothesis requires more rigorous investigation.

All this data — or lack thereof — lead to one important question, according to Calabrese:

“What do we do about this?”

There are currently no approved therapies for long COVID. There is a “small pipeline” of drugs, including antivirals, metabolomics, anti-cytokine therapies, immunomodulatory drugs and those targeting chemokine receptor type 5 (CCR-5), Calabrese said. However, there are no data yet.

That said, patients with fatigue, many of whom meet criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), may be managed by rheumatology.

“These are patients we know,” Calabrese said.

Similarly, patients with autonomic dysfunction as part of neurocognitive complaints may demonstrate pain and inflammation that is familiar to rheumatologists.

“We should be very interested in this,” Calabrese said. “Rheumatology has a lot of studies of the autonomic nervous system.”

Meanwhile, for patients with cardiopulmonary complaints, he stressed that rheumatologists should consider referral to another specialist.

“It needs to be done by people who know what they are doing,” Calabrese said.
[...]
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https://www.healio.com/news/rheumat...anagement-should-be-treating-symptoms-empathy
 
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Tom Kindlon said:
https://www.webmd.com/covid/news/20230306/long-covid-takes-toll-on-health-care-system
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A doctor in the U.K. recently wrote that she and others initially carried on working, believing they could push through symptoms.

“As a doctor, the system I worked in and the martyr complex instilled by medical culture enabled that view. In medicine, being ill, being human, and looking after ourselves is still too often seen as a kind of failure or weakness,” she wrote anonymously in February in the journal BMJ.
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Sly Saint said:
‘Starting point’ for long COVID management should be treating symptoms, empathy

https://www.healio.com/news/rheumat...anagement-should-be-treating-symptoms-empathy
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Here’s a piece from the same Lenny Calabrese. I think you’ll find a lot of the tropes noxious, devoid of empirical support, and demented. Learned helplessness makes an appearance! How Calabrese is now being consulted as an expert is bewildering and disturbing. I hope everyone gives this link a cursory glance!

https://www.ccjm.org/content/ccjom/66/6/343.full.pdf
 
Sly Saint said:
‘Starting point’ for long COVID management should be treating symptoms, empathy

https://www.healio.com/news/rheumat...anagement-should-be-treating-symptoms-empathy
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Why does he keep saying they know about this when they clearly don't? That annoys me so much. No, you are not familiar with this. WTH?

And you can't treat symptoms because medicine only knows how to do that when they know the biological mechanism. FFS get a grip about what you're working with, you failed to do something and have to start from scratch, accept and move on, damnit.

Also, if we depend on empathy here, the universe have mercy on us because we are fuuuuuucked. Gonna need a plan B here. Maybe just skip the empathy gap and work with patients at all levels, so you get first-hand information instead of terribly distorted third-party perspective that fits everything in boxes and doesn't any boxes for any of this.
 
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